It's My Cancer and I'll Cry if I Want To

Devoted bloggees may recall that on day one of my southwestern spa mindfulness trip, I overhead a discussion at the spa pool and realized that I wanted to cry. 

Not right at that moment, but at some point during the week. There are many kinds of crying: crying in pain, in grief, in sadness, in joy, and as a release, to name a few.  I think I wanted to cover several of those types.

On day two, I had an outdoor therapeutic deep tissue massage, which I had really been looking forward to.  My stress--like many of us--builds up in my neck, shoulders and back.  I am fortunate to have a fantastic massage therapist at home and to know what a good massage feels like. Unfortunately, this was not it.  "Deep" to me means, well, deep.  Dig into my back; find the knots; press on them; touch that pain sensation and drive it away.  For 30+ minutes of the massage, I repeatedly requested "deeper, harder, there . .  no there . . . )  It was frustrating for me and likley unpleasant for the massage therapist (MT) as well.  I had advised MT of my cancer--because the area where my port is (left chest, below collarbone and above bra line) is a no-touch zone.  The rest of me is completely touchable.  I couldn't help but wonder if she was scared to touch me harder.  Afterwards, I felt no relief; I felt like I had wasted precious time.  I was torn . .  do I say something to spa managment? complain? or just remain disappointed? I sat there in my spa robe for a bit, silent tears running down my cheeks.  I ended up talking to the spa manager.  It was all very quiet and discreet, and he offered me another massage the next day, with a super MT named L, known for her strength and deepness.  Kudos to Miraval and to the spa manager for handling this so professionally and compassionately.

MT L and I had a great session on day 3. She had already been given a heads up about my port and my desire for depth. We connected, muscularly and oherwise--a book she suggested that I read is the exact book I was already reading (for the second time actually--"When Things Fall Apart", by Pema Codron--I highly recommend it.)  My back and shoulders began to open up, and other parts seemd to follow.  MT L suggested that I try Thai massage, as that would go ever deeper into the kinks, knots, and  stored up gunk.

By day 5, my  final day at Miraval, I was relaxed and rejuvenated.  I told lovely daughter (LD) that I loved our week, in that every day I woke up happy and went to bed happy.  But some part of me still wanted more, deeper.  I still had not truly cried, and since the "Equine Experience" had not triggered tears, I wasn't expecting it at this point.  Little did I know.

I went to a session called "Mindul Stress Mastery."  That session had my name on it!  I thought it would be a lecture of sorts, e..g, "five ways to reduce stress and reach optimal health".  In fact, it was far more raw and honest.  About 10 of us sat in a circle, propped up by meditation chairs, pillows, and blankets.  Stress expert MG (SEMG) led a discussion of what we all stress about, how we deal with it, how to deal with it better.  We each revealed a  small bit about ourselves, and yes, I talked about my cancer, and how my stress emerges with small everyday occurences, often in parking garages. 

SEMG guided us into a walking meditation . . . just around the room, each at our own pace, in our own space.  I was cold and wrapped a large, soft red blanket around me as I slowly walked through the room.  I came face to face with a wall and stopped.  I started crying, still silently, but more abundantly, tears streaming down my face as I stood with my face to the wall, clutching my blanket.  I realized that what I was doing with thr blanket was hugging myself. And that what I really wanted more than anything was a huge bear-hug, from a large, protective, male human, with arms around me, assuring me nonverbally that  everythng would be OK.  And I wanted that hug without asking for it.  And I realized that I didn't know where a gentle giant hug like that might come from, or whether it would ever occur.

Then I pictured my Dad.  Dad passed away in 2004, just a few months before my Mom.  Some cousins said at the time that he was a rock in all of our lives.  Dad was also a great hugger.  I cried more silent tears as I thought about how much I miss him. 

After the walking meditation, we returned to our circle, and SEMG asked us to lie down, as she would then guide us through a body scan.  A body scan??  I smiled through my tear-stained face, and asked "will this be covered by insurance?" I remained aware as she talked us through the scan of the right leg, then left, and then I drifted off into that lovely zone between wakefulness and sleep.

My Thai massage was moments later.  I told Thai massage person M about my port, and he replied "I'm not scared of cancer."  I liked that.  He proceeded to push into my nooks and crannies with his feet, stretch my arms, legs and hips in varying directions, and generally turn me into a pool of mush.  I shed a few tears, and then I was blissfully done with my crying game.

Tearfully yours,

Cdiva 

Cancer Diva Adventures: The Dark Horse is a Winner!

I was a willing participant in the Miraval Equine Experience earlier this week, with little knowledge of the activity, except: 1) there would be no riding of the horses, 2) we would work closely with expert trainers to learn to communicate nonverbally with the horses (I did not ask if they're experts in training horses or training people), and 3) (unofficially) it can make grownups cry. All sounded good for me: I'm a city girl, with virtually no experience in riding or interacting with horses, and the crying part was calling to me. Plus, I had purchased cowgirl-ish straw hats for myself and my lovely daughter (LD) for the trip.
Our expert trainers C and K (ET C & K) were very supportive and encouraging (although I was a bit disappointed that neither resembled Robert Redford in the least.) ET C started the eight of us out with a discussion. Why are we here (can anyone say or hear that without thinking of James Stockdale?) I reported my poolside overhearing of the crying part. "Why would you want to come to an activity to cry?", ET C asked.  I chose to not reveal all, and just replied as I did by the pool, "I guess we all have something to cry about."

We divided up into pairs, each pair to choose a horse. I was immediately drawn to the brown & white painted horse, as those are the colors of my sweet pup Lulu, but others had already chosen him. This turned out to be an advantage as painted horse (ph)  (not to be confused with Perfect Husband (Ph)) was not very compliant.  Neither is Lulu, who is very anxious even aggressive with new humans, but Lulu weighs 25 lbs, not 980.

My partner K and I then went to Leo, the dark (brown) horse. We were instructed by ET C&K on how to approach our horses, where to stand to avoid being kicked, and how to squeeze a horse's lower leg to get him to lift its hoof (they are trained for that response.) We were then to hold the leg/hoof as shown/directed, and clean out each hoof with a special tool. K is a brave soul and went first, to clean the left-side hooves of Leo. It took a few tries, and some guidance ("you don't need to sweet talk him; just show him who is in charge), and then K succeeded marvelously. I was a bit of a nervous Nellie, so K & ET K turned Leo around, giving me access to his right side. My first few tries were unsuccessful. ET K said that I was not communicating clearly with Leo, as I was intermittently squeezing, then loosening my grip--so Leo wasn't sure what I wanted. Hmmm, what does that tell me about my non-horse relationships?? I tried again; Leo lifted his rear hoof a bit . . . and then started pooping. I backed away, and ET K shoveled it up. I thought this actually was a good development, as Leo likely felt better after that . . I think most beings do. I strode back over--purposefully, as the ETs had demonstrated--squeezed once; Leo lifted his leg; I grabbed/supported it; and did the pedicure thing. Success!

K and I then brushed Leo, and each took a turn walking him around the ring, Leo on the other end of a rope. It was surprisingly easy . . . he just walked along at the same pace as me.

For our next trick, the eight humans each took a turn with another brown horse named Elvis. Obviously, he must be special to have that name. Our task was to enter the ring where Elvis was unharnessed and could run free, and to use body language and a whip (to hold only, not actually whipping) to have Elvis trot around the ring at the pace we want, and then stop when we want him to.


 Brave K went first, then another Miravalite. I stood up & handed my Iphone to K, asked her to take photos, and that committed me to going next. I did not want to be first or last. I had sort of assumed Elvis wouldn't comply, but I shut out that thought, walked into the ring, picked up the whip and held it high as I swirled slowly in a circle. Elvis trotted along, so he spun a wider circle around the fence as I formed a smaller concentric circle. Nothing else, no one else existed at that moment but me and Elvis. We were in sync. Mutual respect.  I was in control but in a calm, confident way. I decided this pinnacle should be brief, and stopped at lap one. Elvis slowed down. ET K said "communicate clearly with him." I rolled my shoulders back, put down the whip, and lowered my gaze to the earth, as in a yogic namaste gesture. Elvis stopped. I think I heard a few people clap. It was magical. I was totally in the zone. It lasted less than two minutes.

ET C said that is mindfulness. ET K said she watched me transform from being anxious to being calm and in control. I said "thank you."

So, I did not shed any tears at the Miraval Equine Experience. But there is always another day.

Crying post to follow.

Yours calmly,

Cdiva

Cancer Diva Adventures: Judgment Day at the Spa

Lovely daughter (LD) and I are at Miraval outside Tucson, AZ, and it is just as wonderful as hoped: peaceful, sunny & warm, delicious healthy food,  abundant opportunites for yoga, workouts, hiking, meditation, mindfulness, massage, facials, and classes in mindfulness, minimizing stress & other ways to better oneself. In between all of that, we veg out at the pool. 

The spa pool area is generally quiet, with most patrons reading, listening to music with headphones, or dozing off, and a waiter discreetly offering frozen mint lemonades and other concoctions.  Adult beverages are available also, and one group of girlfriends seemed to be enjoying those vigorously one afternoon, leading to rather vigorous, loud, alcohol-infused conversation.  I didn't want to judge, but I admit I was annoyed by this, as I really wanted to read/doze off, and even with headphones on, I could hear every word clearly, from irritatons with their kids and husbands, to  "I'm just not a zen-type person" (in case we hadn't noticed).  I really struggled internally with my desire to tune this out, my annoyance at the loud intrusion, and my desire to not judge. I was judging them and judging myself for judging them. Arghhh! I did nothing except occasionally glance over, as if they would read my mind and quiet down.

Then an extremely loud conversation emerged and moved closer, including a woman sitting right next to me.  "I heard  they were crying!" "How ridiculous!!" "What would they be crying about??" They clearly were talking about something occurring at Miraval, and I just had to ask the woman next to me (quietly, of course) what they were talking about. "Oh, it's called the Miraval equine experience. You like train a horse or something."   I admit I then commented: "everyone probably has something to cry about. I think sometimes at a place like this you just have to suspend your disbelief."

I was immediately intrigued by the crying aspect and attracted to the activity they disdained.

Miraval equine experience, per the brochure: "an opportunity to live life in the moment . . . Work with specially selected horses . . . Expert facilitators . . . Nonverbal communication with the horse . . . Notice personal patterns that may be holding you back from the life you want to live."

I signed up.  Happening later today.  Will the horse know I have cancer and be extra gentle? Or maybe I'll get Mr. Ed?  

Naaaaaaay!

Cdiva

Cancer Diva Adventures: What comes free with cancer?

Does anything? I have wondered that for awhile.  My dear mother, when I would visit her and my Dad in Florida (that been almost 10 years . . .  ) would often offer me shoes that "come free with diabetes." [no, I'm not your size, and I wouldn't wear those beige puffy lace-up thick soled shoes if my life depended on it.] "No thanks, Mom, I'm good." Mom had worked in retail at a high-end Philadelphia department store (who else remembers Bonwit Teller?)  She loved to shop and loved a bargain.  Her typical response to, e.g, "that's a pretty blouse, Mom" was "20[%] off!", which she would say with a satisfied smile. 

Her diabetes definitely made her life a challenge in her later years, so I think the free shoes were somewhat of a consolation.  I don't recall that she got anything free for her heart disease or other debilitating conditions. It all came at a price.

I seem to have acquired some of her dedication to (or perhaps, talent in?) buying stylish attire, and similarly, am very pleased when there's a 20% off aspect.

But back to free. Just a few days ago, I saw a brochure in the chemo room @ Dr S's office from Sylene, a very nice local lingerie shop, in Chevy Chase, Maryland.  I had not noticed these brochures before, or perhaps had no reason to look at them (I already shop there)--but this time during during chemo I had a mission--scouting out potential sponsors for the Annual Living Beyond Breast Cancer (LBBC)'s Yoga on the Steps event. LBBC is a great group, devoted to providing education and suppport for breast cancer patients. And I like the name. It means even more to me now that I will always be living with breast cancer, but also want to have a broader, fuller life.  LBBC asked me to be on the planning committee this year, as I've participated in the event for its first two years in DC, and also was the top individual fundraiser both years. (Thanks again, generous friends & family, and note that I will be asking again this year! :). I agreed to be on the committee, with the caveat that I likely can't do a whole lot, as I actually have/am being treated for bc, and am currently on serious rest time. I feel bad when I can't do something someone asks me to, but I think they generally understand.

Back to free stuff. The Sylene brochure actually said "bring this in for a free bra."  Really?? Sylene is a lovely store, with attentive service and a nice selection.  Their bras are pretty pricey, and I'm sure even the little stretchy number they show would not be cheap. I read the brochure closely, lawyer-like, for exclusions. Do I really deserve this free bra? After all, I can afford to buy my own lingerie. Also, my surgery was almost three years ago, and I fortunately did not have to have a mastectomy (that might be the target audience, as Sylene offers services for women post-surgery, including prosthetics, special bras, etc.)  Well, despite these internal questions of worthiness, right after chemo, I walked to Sylene, which is conveniently just two blocks from Dr. S' office, handed them the coupon; said I just picked this up at my doctors office, and I would like my free stretchy bra.  The salespeople (two of them) looked at me kind of funny, and then showed me the selection: pink, white, and animal print. (I won't tell you which one I picked.) I felt uncomfortable, as if they thought I was scamming them somehow  . . . perhaps because  I dont look sick? It was awkward enough that I wanted to show them that I am a regular paying customer, so I bought another bra. I even asked them to look up my size, so they would see I am already a frequesnt customer.  But Mom would be proud . .  I already  had a 20% off coupon. 

It makes sense that diabetes patients would get shoes, and breast cancer patients would get bras. I googled a bit to look for more examples.  Breast cancer patients also can get free wigs if they can't afford to buy them. Parkinsons disease patients can get free information. Thats good, but not as much of a consolation somehow as free clothing.  Googling "cancer free" brought up different kinds of results.  Cancer free.  Now that would be the best gift of all.

Yours in bargain hunting,

Cdiva

P.S.  While writing this during my flight to Tucson, the flight attendant offered me a free snack box, since I had offered to change seats to allow another passenger to sit with her family.  I accepted it.

Adventures of a Cancer Diva: Everyday Angels

I am fortunate to have many angels in my life: friends & loved ones who send me funny cards, stop by to visit (or understand when I need alone time), help me with my blog (the technical aspects that drive me bonkers!), send or bring treats (chicken soup & cheese straws & chocolate covered strawberries . . oh my!).  One dear friend & former colleague was so understanding when I was late and completely missed our lunch date-- and she even brought me lunch @ my next appointment.  Another BFF checks in so often she calls herself my stalker.  You are not my stalker, dear friend; cancer is my stalker.

Recently a truly beautiful and giving angel popped into my life via the Internet, at a time of desperation.  It was my first week of short term disability (STD) and I had spent dozens of hours online & on the phone trying to plan a trip someplace warm and zen and healing, and to coincide with lovely daughter (LD)'s Spring break.  Last year, I had an actual prescription to take a vacation. 

This year, I knew the signs and symptoms, and was writing my own prescription.  But attempting to plan this was the anti-zen, as it was very last minute; there was  little availability, and the zen was coming at a high price. I couldn't decide where to go, and even when I narrowed it down, it seemed impossible to get there.  Then, for some reason, my zillionth google search led me to a website, www.MindfulAdventures.com

The website describes various destination spas, retreats, workshops, wellness and healthy living.  There is a photo of a smiling, pretty woman named Donna. She is a travel and wellness writer and also works with people looking to make changes in their lives, e.g., kick start fitness, weight loss, eat healthier, deal with a transition.  She looked and sounded like someone I'd enjoy talking to, and there was an actual old-fashioned phone number.  I called it, and  . .  no recording, no enter 2 for such & such department, no busy signal . . . . Donna answered the phone.  An excellent start that got better and better.  We chatted; I told her what I was looking for; described my situation (LD's Spring break coming up soon; I'd love to have some time with her; need to heal physically, mentally, spiritually, and whatever other way there might be to heal . . . yeah, I guess I played the C-card.)

Donna sprung into action.  She suggested a place; booked it; and helped me with all of the details.  This involved about six more phone calls, including some from Donna to me while I was in the chemo room, waiting for lab results.  She was so friendly, easy to talk to, sorry to disturb me . .  I was delighted to have this help!! Within hours, we were booked.  By the next day, LD and I had our spa appointments in place.  Tucson, here we come!  83 degrees and sunny! DC is dreary and way too cold for March.  LD and I will be staying at Miraval Spa & Resort.  Check it out.  www.miravalresorts.com   It's a big splurge, but hey, what would I be waiting for?

Meanwhile, Donna and I both felt like we had made a new friend.  She said there was a reason our paths crossed, and I believe that. Several days later, I looked at Donna's website and her new blog post.  She wrote about her donation of a kidney to her husband, as his best chance for survival.  http://mindfuladventures.com/blog/index.php/2013/03/14/embracing-hope-finding-faith-part-1/

Donna gets it.  That's why we bonded. Another patient with a chronic disease told me when we first connected that he is drawn to people who have faced adversity and lived up to the challenge.  I couldn't have said it better myself.  And I believe it's these everyday angels that help us get through each day.

So, be an angel for someone this week.  Anyone.  maybe someone you don't know.  Pay it forward.

CDiva

Cancer Diva Adventures: Short and to the Point

Ok, so, whats my point?

Yes, I write and write and it's all about me, but kind of bigger than that. At least that's a goal. I've learned so much through being a cancer patient, and I think much of it is useful information for others.  So, bloggees, a chance to learn about the cancer experience without actually having it. (I hope.) Unfortunately and undoubtedly, someone you are close to will experience cancer or another serious disease at some point.

What do I want folks to know? This morning, I awoke to a clear mind and these organized thoughts:

1. Cancer sucks, and treatment is tough, but it can be doable and liveable.

2. Stage IV is not always a death sentence.

3. There are many many people in the Stage IV club--perhaps someone who smiled at you today, who gave you the finger when you were driving to work, or who was sobbing hysterically in the parking lot.

4. We have made great advances, but we need more: more research, more identificaton of cancer subtypes, more diagnostics, more targeted treatments, including treatmnents for Stage IV/metastatic disease. Maybe someday, a preventative or a cure. It takes time, money, brilliance, dedication, and more.

5. Our world needs to adjust to the fact that many patients are living lengthy lives with chronic diseases.  Patients who want to juggle treatment with work and family obligations deserve a fair chance to continue to lead productive lives. 

So, think about this. Observe. Share your thoughts. Ask questions. Take action. And blow someone a kiss.

Yours in brief clarity,

CDiva

Critters and Beautiful, Brave Lori

The 4th Annual Critters (and Couture!) for the Cure (CFTC) Fashion Show Gala was a big success, raising more than in prior years--more $ to help DC-area patients with breast and gynecological cancers meet everyday needs in life--like getting to chemotherapy and radiation appointments, buying food, paying their electric bill, taking their beloved pets to the vet. The patient (and I don't mean they waited a long time) models were lovely and inspiring, and the pups were adorable.  But the true scene stealer and star of the night was Lori White.  Lori (dark hair, bright top, black leggings) is in the pics below with the other models, and with CFTC President & CEO Clancy Kress.

Lori modeled and received an honor as well.  She smiled and radiated positive energy, despite her recent bad news that her breast cancer has metasticized to her brain.  Mets, they're called in the cancer community.  In my world, it is no longer just a New York baseball team.  Lori was treated in 2011 with chemo and radiation.  Her breast cancer was detected in a routine mammogram and had not spread to any lymph nodes. But after radiation, three lesions were found in her brain.

I met Lori after the formal part of the event and told her she looks beautiful, has such a healthy glow and positive spirit, and I am incerdibly impressed at how brave she is.  She told me she has triple negative breast cancer.  Wow.  So do I. I think she is the first other triple negative breast cancer (TNBC) patient I have met, although I do know of a few others.  We hugged and teared up a little bit, wished each other the best, me in my continuing chemo (and probably clinical trial after that)--Lori in her clinical trial, in Dallas, a long way to travel for medical care.  We exchanged phone #s and email addresses. 

Lori and I are both TNBC patients, and we are both Stage IV, but I am on a much earlier part of the stage IV spectrum.  Once cancer leaves the local area and metastisizes, it can go to many sites in the body.  For breast cancer, the most likley areas (listed in order of concern from least to most) are: soft tissue/lymph nodes (me), bones, lungs, brain, liver.  The goal fior someone like Lori is to knock down that cancer in her brain, and keep it from spreading.  The goal for someone like me is to keep the cancer at bay; keep it out of my bones; keep it away from vital organs.  They are lifelong goals.

 

At home after the event, I enjoyed some of the people treats, and Lulu gobbled down the doggie treats.

And I thought about Lori. Lori, girlfriend, you are in my thoughts every day.  If beauty and good karma can carry the day, the day is yours.

Sending good karma to Lori, Clancy & the CFTC team, and all of you.

CDiva